Yes we won !!!!! Got the phone call this morning just as I was about to launch my full frontal attack (that might not be quite the right expression but you know what I mean ) .The CCG didn't phone direct but got the nurse who did the original assessment to phone .We are getting full funding back dated to the start of September for a start and she is fighting our corner to to get it back dated for a year .I guess my rant at them yesterday had some effect after all . I doubt if the decision was made today ,I think that it has been sitting in someone's in tray for some time .

I would like to thank all my friends here who have given me so much love ,support and advice throughout this long and tortuous process - without you all I may well have given up the battle .

I am not going to stop now , I am going to continue the fight at a parliamentary level to try to get this dreadful system reformed for other people who have yet to face the horrors of CHC funding when they are already suffering considerable stress and anxiety with having to deal with PSP .

love to you all Georgpa ( exhausted but jubilant )

58 Replies

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  • I love a fighter - just sad you had to go through all this to get what you deserve - now go and have a well deserved rest (yes, that would be fine thing!) . xx

  • Thanks Lieve I expect it will take some time to sort out the details but at least we are on the way .Large glass of wine is in order -I think .

  • George so happy that it had been approved, hopefully they will back dated longer, you should really have got CHC years ago. Well done George, you had to fight for it, but really deserved win πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰β­οΈ

  • GOOD NEWS!!!!! I said it before and I will say it again, there is power in numbers and we should start something. Dont tell me Dr's dont know about this disease, there just isn't enough LOUD MOUTHS like us talking....and boy can we talk. There is a group of doctors in Toronto that study movement and they were the one's that diagnosed my mother in law, maybe getting them on board with this would be something to consider, we cannot just sit by and have our loved one's and many more after them just sit and wait for care, while we exhaust our selves trying to care for them......

    How about inviting them to our conversations, having them listen to what we are going through every second of the day will help....this madness has to stop

  • Good idea!

  • I totally agree with you! It's not good enough that people suffer until they almost break or indeed do break? Neither is it good enough that our loved ones are treated with no respect. Count me in on anything you want to try! We have a lobbying group here who have been pretty good at getting government and utility companies to sit up and take notice. I really think in the UK we should get them on board. They would certainly highlight the fight people have to get what they are entitled to and to explain what this disease is too. My husband has also been told he has symptoms of MSA but they could change that next month? There are another group of people nobody has heard of? Strength in numbers?

    Marie x

  • I e-mailed the specialists office and let them know about this group, I invited her to take a look at the struggles we are all experiencing, I hope she passes this on...unfortunately, as with my mother in law, they are more interested in getting information from her rather than helping...I know this may sound a little morbid BUT they did suggest we allow them to conduct an autopsy on her once she passes to better understand the areas of the brain that get effected with CBD.

    It will be through research that they may be able to find a cure or at the very least study. Just putting it out there

  • I know you are right but it doesn't exactly make you want to queue up to give your loved ones brain away? My sister-in-law died almost 3 years ago. She had MS. My brother found out a few months later that they had removed her brain but hadn't told him. They actually asked if he wanted it back! He was so upset and not long after that decided to move to Spain where he now lives. It might well have been different had someone thought to speak to him? Again it means more education about all of these conditions?

    Marie x

  • You are so right you know? My husband also has Leukaemia. I was treated with contempt when I asked about his walking. I was told he would walk that way as he had Leukaemia. I have had no medical training but if someone has responded well to a drug and their bloods are good then it sure as hell meant it wasn't Leukaemia causing the problem. This was from a Haematologist by the way!

    My husband went to see him on Friday and he nearly shook my hand off. He asked me what had been going on with him so I told him. I also told him any problems he had were not related to his Leukaemia and that was under control. He examined him then looked at me and told me I was right!! His bloods came back normal too. So 0 years of medical training and I have more common sense than the Haematologist!!

    Had a major falling out with the Ambulance Service after that! They are total idiots and they lie! So I reported them to PALS! Not taking any prisoners this week. Had a 2 hour meeting with the PALS service at the hospital on Tuesday! Now have phone numbers of the two Matrons I met in case hubby has to go in there again.

    Social worker has been moved so now have to start with a new one! So NOT happy! She was useless but we will probably loose a month or two getting to know a new one now? Meanwhile no news on CHC! Arghh!!!!

    Anyone else have constantly to try and get to know a new Social Worker? I have lost count of the number we have had.

    Marie x

  • Well done you, so happy for you both and fingers crossed you get it backdated for the year. I hope you have the bubbly on ice, I have a glass of wine at the ready and raise a glass to congratulate you on the result you well deserve. Cheers

    Love l

    Kate xxx

  • Good fir you. Sometimes we forget that we only loose the bAttleboro now and than not the war. The only way to do that is keep fighting. You have been such a great warrior. hugs. I am so tired too weary to battle on. Than I got your good news and feel encouraged that it is not all in vain. Just when you think you can't take one more straw before breaking something starts to shift and there ia a glimpse that help is on the way. God bless.

  • Hooray for you. It's just a shame though what you're put through advocating for your loved one.

  • I'm so pleased for you George, well done! It's hard I know too well, but justice always wins in the end as I know too well!

    Love and big hugs.... Pat xxπŸŽ‰πŸ·πŸ˜˜β˜ΊοΈ

  • I raise a glass to you both. God bless with my love Flicka x

  • Brilliant! Don't expect it to take a long time. It doesn't have to. I was told on the Friday that it had been granted and the following Wednesday we had the first night nurse. So if you haven't heard anything within a week, go into battle again.

    I am going to have a celebratory drink tonight and toast you.

    Well done Georgepa.



  • Thanks NannaB I haven't taken the chainmail off yet !

  • β›“β›“βœ‰οΈ πŸ˜‚


  • An example as ever, George!

    Lots of love


  • What wonderful news Georgepa I am so relieved for you. I do hope it will help ease the burden a little. πŸŽˆπŸŽ‰

  • Well done you! Inspirational determination! X

  • You are all very kind - I am only doing what many of you have already done and what many of you are also going through . I really do think we should all be writing to our MP's Sarah Wollaston the Chair of The Commons select committee , Jeremy Hunt etc to see if we can make them take notice to make things easier for those coming behind us who have yet to deal with the Clinical Commissioning Group.

  • πŸ‘πŸΌπŸ‘πŸΌπŸ‘πŸΌπŸ‘πŸΌ well done Georgepa, it must be such a relief, after such a battle xxx

  • Oh so pleased , hope it goes some way to easing the stress. X

  • Jubilation jubilation!....Congratulations V and Georgepa. On behalf of those in the UK who you are about to help through your ability to speak and or write so articulately , thank you.....I may be an American but I sure as heck know we all need someone like you fighting for us.....

    .Jubilation Jubilation


  • Congratulations! I love it. I will need to take lessons on your fighting skills. (PS I am toasting you with my glass of Cabernet.)

  • What wonderful news! I can only imagine how that felt, but it's cheered me right up just hearing it. Bravo!

  • Wonderful news Georgepa xxx

  • Great news. Do let us know what you said/how you got on if you get in touch with MP or whoever. Maybe we in UK can do the same with our locals. Good luck. Marie

  • Great news. One big stress ticked off for you x

  • so pleased George so deserved I am so Happy for youPxx

  • Well done George pa, about time.

  • Congratulations, it just shouldn't be that difficult. I wish you every success with your crusade, if you can bring about a real change you deserve a medal; better still be appointed health minister.

    What I fail to understand is what purpose the delay serves. The funding is back dated so there is no financial benefit. It certainly adds stress, anxiety and annoyance to the other burdens carried by the carer, surely that cannot be the intention. I don't question why an assessment is made, simply why is the system so inefficient, or incompetently administered.

    Doubtless you'll get it sorted Georgepa, well done.

  • If the carer just gives up or ctgeir loved onevdiescthen it save money? Sorry for being a cynic but they really hate helping people. Suppose it's the cuts? I refuse to call them savings because they are cuts. How many hospitals have closed? How many will in the next couple of years? They are needed but they have no money to function properly anymore. Our hospital is under threat as are another two locally. They are talking about building one hospital in their places! I just hope I die quickly and never need them.

    Marie x

  • Sorry for the typing! It does that from time to time. Promise I wasn't me!

    I just said if you give up or your loved one dies then they save money? Only way they can? However the lack of understanding must play a big part in all of this?

    Marie x

  • You're not so much a cynic as a realist. I clearly hadn't thought it through.

    It's not just hospitals closing, so are the pubs (we've lost three) so it's getting more difficult to drink oneself into oblivion!!!

    K/ind regards, Jerry

  • Jerry

    I hate the thought of pubs closing too. Yet I hardly drink. Couldn't care less if I never had a drink in fact. They are places for the Community to meet however? So it's breaking up Communities?

    Back to the real issue. They are being remorselessly screwed in the NHS! Far be it from me to defend the way they behave but I can see why these things happen. As I said SAVINGS=CUTS. There is no escaping from that fact. The people who bear the brunt of these cuts are our loved ones and all of us on this site. In fact we are only part of the picture? There are many others being pushed to breaking point? It makes me so cross. I think we should write to our MP's and the MP George suggested.

    My one concern is it doesn't take us forward to ensure people hear of these neurological conditions. What do you think about 38degrees in addition to above? We have to do something and we have all of the desperate stories of people on this site? We can remove names if need be? All we need are the stories to ensure privacy?

    Marie x

  • Hello Marie,

    I’m afraid the fire in my belly is close to being extinguished. I have in the past supported pressure groups including 38 Degrees but am wondering what, if anything, it achieved.

    There is a limited amount of money in the pot. There is no incentive to alter the budget to adequately fund the NHS, when those who have the power to do it can afford to access private medicine. Now who’s the cynic?

    It’s good to see minor skirmishes are being won, at great emotional stress to the individual, such as those of Georgepa and Heady (I suspect those trying to work the system, knowing it to be inadequate, also find it stressful).

    Another solution would, of course, be to increase the size of the pot, which is not helped by the twin strategies of closing or selling our industries, but that is a whole other story not for this forum.

    As I tell those of a religious conviction who occasionally call, I have no faith, but I hope I’m wrong and they are right. In much the same way I hope you are right and I am wrong, concerning the ability to change the system.

    Best wishes and kind regards,


  • Jerry

    When I recharge this device I will reply to you! It's giving up on me!

    Marie x

  • Hi Jerry

    The trouble is society as a whole allows the NHS not to be a priority? Then suddenly we need it and it's falling to bits? I am not going to roll over on this one. It's too important.

    Like you I have days when I really can't fight but I will use the days when I feel stronger to take them on and to make people aware of these conditions. I am not brave enough to go on TV or to tell what a lot of heartbreak my husband and I have gone through and are still going through.

    I can use the tale of PSP and MSA and what it does to people to make MP's and the NHS aware of what happens and how people are treated. I have already made a complaint to PALS at our local hospital and got a 2 hour meeting with both PALS and 2 Matrons at our hospital. They gave me their telephone numbers should my husband end up in hospital again.

    I made another complaint to the PALS service of West Midlands Ambulance Service who now cover our area and also The Wirral. Never knew we had physically moved! Anyway I think they are dire. So told them in no uncertain terms that if my husband was left as long as he was on Friday waiting for an Ambulance to collect him from hospital they would find themselves on the 6 o'clock news and in every paper who was interested in hearing the story! They asked me when his next appointments are. So we shall see?

    Yes I was angry and although I don't want to do something like that, if he is messed around again I will make sure the NHS Nationally know what a rubbish service we have and contact the press even if I have to do it anonymously. God I feel angry, and it's Friday since they made me so cross! Haven't calmed down yet!

    So Jerry and everyone else let us fight this. Nobody else will fight for us? How many times have you seen people on TV tell their tales of relatives with cancer? Is that why it's a priority now? I think it is!

    Do we want to lose the NHS or do we want to take it back to where it used to be? If everyone of us wrote to our MP's and made this an issue it would become one. They all need our votes? So regardless of whether they are in power or in opposition contact them! Also use George's name for the person who is chair of the health select committee. Maybe look up the rest of the committee too?

    I know we can't do this overnight but we can do it over a few weeks/months. So who is going to join the gang? All we are talking about is maybe one or two email to highlight this?

    Marie x

  • Hi Marie,

    Did you hear the debate on Women’s Hour (Tuesday) concerning the crisis in the NHS and Care funding that resulted from the recent changes in the law? At the end of the article, the presenter asked for anyone with direct experience to contact her via twitter or email. You may consider contacting them and get wider exposure via the media.

    Sorry about the late response.

    Kind regards,


  • Jerry

    I didn't hear that unfortunately. I am going to ring them on Tuesday and do a George! Have to go to the Neurologist on Monday. First contact with him since January! We now have no Social Worker! In fact the only person we have is a new doctor who although nice knows nothing about PSP or what medications to use to ease symptoms!

    Marie x

  • I believe they hope people give up. I bet many do.

    That saves money. People are told you won't get it.

    Cynical, moi ? !!!

    Jean x

  • Well done our hero! You are great. V is lucky to have you fighting her corner. I truly am so glad. Maybe I should scream at them on Monday?

    Marie x

  • Well done Georgepa, I remember the HUGE relief and feeling that we were completely justified in taking on the powers that be. Up until we were granted CHC, I was made to feel that we were perhaps `making a fuss about nothing`.

    Keep going with your battle.


  • Yes you should .In all fairness I expect they are understaffed and I have found out that they have a high turnover of staff as people leave when they too are up against a system which is designed to make it difficult to claim .It was called The NHS's best kept secret a few years ago by the Guardian newspaper .

    Do write to Dr Sarah Wollaston.She was aGP is now the MP for Totnes and is also Chair of the Commons Select Committee on Health .They can call ministers before them to explain themselves .I have heard that she is very tenacious when she gets the bit between her teeth .Better than writing to Jeremy Hunt as you will just get a placatary letter from a junior civil servant .And yes tell your ownMP what is going on .I am also going to contact theBBC's Panorama programme suggesting they do one of their investigative programmes on CHC funding .

  • Yeah!!!! You feel like you have one the lottery don't you? Must admit it is the continued security that goes with it. We have a super named nurse at the CCG and when the three month review came up I asked what should I prepare re paperwork and she replied 'just put the kettle on' now only on yearly review no worries! Joking !

    Julie x

  • Great long may it last !

  • Congratulations! You are absolutely wonderful and I so wish we didn't have to fight so much for everything

  • Hooray!!!!!! Go get 'em Tiger!!!! You are AWESome!!!!!!

  • Hallelujah Georgepa!!!!

    Thank goodness and about bloody time on their part!!

    I will happily send any letters too if you tell me whom to address it to, if we could make the process easier and less stressful for others it would be a rather fine victory! X

  • Google Dr Sarah Wollaston and you will get all the details you need .If you want a copy of the letter I sent her then send me your email address. I can be contacted on

  • Thanks Georgepa

    I've sent you my email address x

  • Up in Yorkshire so only just seen your post !!!

    So happy for you. I'm putting the flags out.

    I will write to my MP and the others you suggest. Its appalling and I always think, whenever a battle is won that there must be so many who don't have the energy , confidence or education to fight.

    Love from Jean x

  • Wonderful news I hope yiu soon get all the help you need. It is encouraging for all of us who have not yet dipped our toes in this shark infested water of application! !!


  • Too right Jean - I have got another battle on my hands now .V's older brother is in a home in Cornwall ,he has Parkinsons and dementia .Unfortunately it is one that featured on the news recently and on the Panorama expose programme last week .We are his only relatives and trying to get him moved out of the dreadful home he is in to being nearer us is a real headache .His social worker claims that has capcity to make decisions for himself .He certainly will make decisions bu can't remember what he has decided a few minutes later .He has no idea where he is or what day of the week it is etc etc .

    We have been told if we are not happy with things to contact Cornwalls Social Services but they don't respond to emails and the people dealing with are never available for phone calls .Sound familiar ?Heyho off we go again .

  • Yes it sounds familiar, but you have enough to worry about. I know you feel responsible, but George, you can't help everyone. Please give V your full attention and let others sort out the rest.

    Lots of love


  • George

    Look up who are the councillors for the council. Send the same email to all of them and copy in the local press! If it featured on Panaroma then send the same email to them and the local MP whoever that is. So only one email but copied to the lot of them!

    Certainly the Leader of the council and the councillor in charge of Adult Social Services should be targeted! Maybe save their replies for the rest of the council if you are unhappy with the response. I will be very surprised if you don't get a reply especially as the council will already have had bad publicity?

    Marie x

  • I must have missed this.

    Well done - bravo.

    Its made my evening.

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